Owen's first hearing aids - 3 months old (corrected). Also, evidence of the large port-wine stain birthmark that eventually faded to become mostly invisible.

She asked me, “Have you ever met a deaf person?”

It was such a quiet, innocent question but still kind of shocking–it jolted me into realizing that Owen’s deafness was not just about me.

Interestingly, no one else had asked me that question, despite our exhaustive investigation into services and ‘treatment’ regarding Owen’s hearing loss.  Not the physicians, the therapists, the audiologists or the social workers.  As with every other medical avenue we pursued, we were instead invited to speak to other parents–and only those whose children had had the anticipated positive medical outcomes.

Such big decisions–we considered the g-tube (yes), the cochlear implant (no), the intrathecal baclofen pump (yes), deep brain stimulation (no)–surely meeting an actual recipient of these invasive measures would have been worthwhile?  A teen or adult who could articulate what the experience felt like?  Or could share how he or she feels about it now?

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Fashionable blue hearing aids! In this photo I'm pregnant with Angus. Owen is about 20 months old.

I spoke at the Silent Voice Annual General Meeting last week.  Talking in my typical story-telling fashion, my presentation was a tribute to the work that Silent Voice does.  It was also a thank-you to Maureen (who has since become Executive Director) and to the deaf family I met as a result of that question.  I think it was the best talk I have given so far.  This is how I concluded it:

That one simple question–Have you ever met a deaf person?–awakened a new perspective in me, one that stuck with me through the years, if not always consciously.  It’s a very sensible question, maybe asked innocently and even naively – but it also demonstrates a foundation of values rooted in humanity.

It acknowledges how important it is to connect with others’ experiences and stories.  To listen and observe, to ask and wonder.  The question says to me, Don’t assume.  Pay attention.  See for yourself.

And be open to possibilities.

Despite the strides our society has made regarding children with disabilities, the treatment or fixing of a child’s severe disability remains such a priority it is often more important than any of the following ideals we cherish for regular families:

• protecting early childhood – which typically means shielding the young child (and the mother!) from stress, performance expectations, grading and evaluations, scheduled work, focus on achievement
• maintaining family equilibrium by giving each sibling equal attention, as well as leaving ample room for the parents to have an intimate relationship
• allowing the parents–particularly the mother–to relish in the joys of caring for a young child
• living within a family’s means and maintaining a balanced budget (going into crushing debt to pursue therapies is not uncommon)

Families with a child with disabilities willingly sacrifice these things and our institutions expect us to as well.  Of course no one comes out and says we must intentionally trade this for that, but when it inevitably happens we get sympathetic looks and reassurance that we’re doing the right thing.

I’m sure we could come up with a million and one reasons for why society works so hard to overcome and eradicate disability in childhood, but I can’t think of any that don’t fall into one of these four categories*:

• Parents have a very hard time recalibrating their hopes and dreams for their children, as well as their own definition of what it means to be a good parent.
• New parents don’t know better, nor are they taught or given options. They have likely never experienced disability before and are often taking on blind faith what is provided to them by healthcare.  (Ever notice that the more experienced a parent is, the less focused she or he is on ‘overcoming’ disability and the more focused s(he) is on relationship and quality?  Can healthcare not help young parents discover this wisdom sooner, rather than let them flounder around until everyone gets older?)
• Parents are fearful. It’s an increasingly hostile world for adults with disabilities, especially those with severe disabilities.  Social isolation, institutionalization, poverty – the outlook is generally bleak.  In fact, some find this so bleak that they see mercy killing and growth attenuation therapy as justifiable options, carried out without consent of the person in question and for which otherwise reasonable people (and in the case of growth attenuation, medical ethics boards) can find empathy.
• Because we can.  Medical technology keeps pace with our fears and sometimes takes the lead, telling us what to fix by virtue of its mere existence.

* I intentionally leave out the motivation that starts with “Because every parent wants what’s best for their child” – this is covered by the first point. And probably the second point.  Oh and maybe the third and fourth. Also, I appreciate that the desire to relieve actual physical pain is a motivation as well, but I prefer to stay away from the subjective and slippery ‘suffering’ attribution. Disability, even severe, does not necessarily mean suffering.

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I don’t for one second advocate for removing therapies for young children on principle–but I do wonder why there isn’t more inquiry on all sides, pondering the hard questions earlier on.  Questions like, will it be worth it? What is it we’re really trying to make the child do, and why? What would my child likely want?  Ought I trade my child’s childhood and my family’s remaining normalcy for what will likely be minimal improvements over a very long stretch of time?

But of course, hypothetical questions can only get hypothetical answers.

If I ruled the world?  More families and parents would tell their stories.  And those stories would be openly accessible to all who can learn from them–doctors, clinicians, researchers, families and the patients themselves.  We need to properly close the feedback loop instead of letting only medicine and healthcare provide partial answers.

typical street in Sunset Park, Brooklyn

Both of my parents were born and raised in Brooklyn.  Both of my older brothers were born there as well, although the family moved to Missouri for the boys’ early years, and then to Ontario just before I was born.  I have never lived in New York City although I came close once, a lifetime ago.

I had a revelation about this American heritage this past Christmas. My oldest brother and his family (who live in California) were visiting, as were some local friends who had stopped by for dessert. In the course of conversation, I overheard him say, “Yes, I always knew I would go back to the States.”  I was mildly shocked to hear him say ‘back’.  That sounded odd to me as *I* grew up in Canada and never thought of the U.S. as home. Back?  I only saw his move to Boston (where he went to school) as leaving.

Looking back I see of course that my brothers had an entirely different childhood to mine.  They grew up together, 2 years apart in age, in Missouri, with their parents still together.  I grew up in Ontario, both brothers out of the house by the time I reached the age of 7, with a single mom and a weekend dad who had remarried and started another family by the time I was 5.  (My parents divorced while I was still an infant.) My brothers and I share very few childhood memories, particularly of place or location.

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For the past few years, I have made a bi-annual trip to New York with varying configurations of family in attendance. What was originally an informal gathering of my mother’s family has now officially been called the Lem Family Reunion.  And true to the Lem family’s ethos of thrift and autonomy, we first gather in a food court – Grand Central Station, South Street Seaport – to catch up.  Then, with news and updates out of the way, a day or two later we meet in Chinatown for a traditional Chinese meal.  Chicken heads and all.

This year, we had 18 people.  We came from Toronto, Austin, Los Angeles and Chicago, joining those who still live in Brooklyn and New Jersey.  To get a sense of future possibilities: there were 15 Lem children, with my mom being 2nd youngest.  6 Lem siblings are still living.  In total there are 26 Lem cousins, widely scattered across the U.S.  I have lost count of their children.

This year’s reunion was last weekend.  I went with Angus, my mom and my sister-in-law from California–and Carsten joined us for part of the time.  Click any photo to enlarge.

The majority of his expenses was covered by provincial and federal healthcare programs, charity funding and private insurance.  And I don’t just mean surgeries and hospital bills – I mean many things related to everyday living, like diapers and formula; homeschooling funding and caregivers to cover at least 30 hours a week; medication and implanted devices; therapy; orthotics, wheelchairs, standers and custom seating; and even our wheelchair-accessible mini-van.  I wonder how having this level of support has shaped my world view?

So as a bit of a diversion, I’m sharing with you my photo submissions to Flickr and Getty Images’ This is Canada photo contest.  The contest is already bursting with its share of landscape ‘beauty shots’, so I went with whimsy and Canadian moments instead.  If nothing else, it was fun to go through some photos…  For more pictures, visit my photo blog.

An article (with comments)  here:

TV Guide profile of ‘Taking Mercy’ on Global

It goes something like this: the deterioration of a mother’s children (from a genetic condition) is so painful for her to watch that she wants to ‘mercifully’ kill them. They are adults now and have been institutionalized for most of their lives.  (Note that she rarely visits them.) She thinks being put to death is what they would have wanted and that ‘this is no life’, to be fed by tubes and fully dependent – she even plays the old ‘God didn’t mean for this to be’ card by implying it’s not by grand design they are alive, but because of medical interventions. (Has this woman never encountered modern medicine…?)  Then, the film solicits soundbites from convicted murderer David (oops) Robert Latimer (who ‘mercifully’ killed his daughter 10 years ago) to offer his sympathies.

They call it a doc although it is anything but.  It is dishearteningly shlock-y and biased, and offers up no disability rights advocates to speak on behalf of those targeted with a death sentence.  But even more appalling, the show gives airtime and sympathy to people who would directly violate another person’s human rights – soft lighting and kind words from the host as they ruminate on how they wish they were allowed to kill (or did kill) their children.

We have LAWS that support each citizen’s individual rights to live – how is this even a discussion?!  And how is this ‘debate’ allowed to take place on public television?!

I have been reading that some people feel this is a private family issue and that it’s for parents to look within their own hearts and decide what is best.  Wha..?  Killing a Canadian citizen, who has his or her own inalienable rights and freedoms, is most certainly not a private issue.

In this context, it’s no different than condoning honour killings. The child has become a burden and a blight to the parent who can’t bear to abide the ‘suffering’ any longer. In both cases, the suffering is experienced by the parent – they just can’t take it anymore so they kill the offending child.

I watched the video and saw two grown children with severely disabled bodies, very much like Owen’s. I have been in this woman’s position of being the parent to such a person.  (“Walk a mile in my moccasins”, she says. )  And I have never entertained thoughts of killing my child to relieve his suffering, and I questioned daily whether he was actually suffering or not. Owen, in fact, lived a full and varied life.

Let’s say we allow ‘mercy killings’ – those two people would be killed and Owen would not.  Why?  Because of the perspective and capacity of the parent.  Hardly an equitable accounting. And most certainly not in keeping with our human rights contracts.

“But what about quality of life?” one might ask. Shouldn’t that be taken into account? In short, no.  Full stop.

“But what about the parent’s life? It must be so hard…” Yes, sure can be. Doesn’t justify murder; we don’t kill people because they are inconvenient or too much work.

If you’ve been a reader of this blog for a while you will know that based on my own experience, I believe that:

• most parental suffering is externally and systemically reinforced and can in fact be overcome with a deliberate change in perspective and resistance to the ‘status quo’, and
• the perceived suffering of someone else who can’t express it is just that – a perception.  Which not everyone will share and therefore cannot be universally defined.

My comment from another blog yesterday, below (lightly edited):

Not judging people is one thing, but absolutely we should debate and judge each others’ actions. These issues are not private family matters and in my mind, are not grey areas nor are they complex. These issues are about a society’s ethical and legal obligation to protect its vulnerable populations. It is not for a parent (or anyone) to decide whether or not a person lives or dies (or in this case, is killed) based on their disability, particularly when they are not capable of making this request or decision for themselves.

Millions of people endure “horrific and unmitigated suffering” on a daily basis probably FAR worse than the disabilities ‘suffered’ by Corriveau’s children (war, torture, poverty, enslavement, political oppression, extreme and chronic pain) and don’t choose to kill themselves – so is it an ultimate act of love to kill them all too?

Despite how easy it is to kill oneself, death does not seem to be the remedy of choice for most people in the world who are objectively (and can self-identify as) suffering.  In fact, human capacity for suffering is immense.

These issues are not complex or tricky or grey. Rather, I think they are simple: we should not kill vulnerable people because we can’t stand to see them suffer (even, I might add, even if they are actually suffering) or because we don’t know what to do with them.  We are ethically and legally bound to allow and protect their right to live.

I. Can. Not. Believe. that I feel compelled to publish this post.  I never thought of myself as a disability advocate but this issue just might turn me into one.

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Donna Thomson, author of The Four Walls of My Freedom, spoke at Holland Bloorview recently. When I watched this video for the first time, a brief mention of a brilliant thought nearly passed me by.  She reads a passage from her book about the Capability Approach, then says she likes it because it positions disability alongside gender, race, language, culture… just one of many possible identities.

Donna shares these thoughts at 1:24.

This is an important revelation for me – treating disability as an identity issue negates value judgements and worthiness arguments. It demands that we protect disabled people’s rights as diligently as we would protect our own–the same way we have come to protect rights for women, people of colour, immigrants, children…  Clearly, disability continues to be a stronghold of extreme prejudice.